Coming To Terms With Stoma Life

Some people get a day. Some may get a week, a month, a year. Others may get no warning, simply waking up with a new life.

From IBD and cancer, to colonic inertia, pelvic floor dysfunction and bowel trauma, stoma surgery is undertaken for various reasons. It may be temporary, with the hopes of being reversed at a later date, or it may be permanent.

One thing remains constant: having a stoma is a big deal, though the experience of life with a stoma is as different as every individual is unique.

Pre-Op : Ignorance Is Bliss?

Although I had forewarning and agreed to the surgery, even as I was being rolled in to the operating room my brain hadn’t quite absorbed what was happening. I talked to my parents about it as though it were a clinical rather than personal issue, as though it were happening to someone else. While my parents were upset, I was busy preparing for surgery and focusing on the practical things I could do. It was my third operation but it didn’t feel any easier to get my head around.

In some ways, there was an element of ‘ignorance is bliss’. I didn’t want to know too much; just enough to prepare myself, not too much to scare myself.

Immediate Post-Op : The Aftermath

Fast forward to that day, and I woke up with a clear bag attached, rather than the opaque ones you tend to use normally. This is to allow nurses and doctors to see what’s happening in there. For me, it was a horrifying shock. Nurses came to empty the bag while I was in bed, too exhausted to move. IV morphine held back most of the pain but I was unable to leave the bed and sick from the meds, so I was pretty out of it for the first day and most of the second, too. When the bag was emptied and poked and prodded, I looked the other way. The sounds and smells of that ward made me want to go home to take a hot shower and sniff a vanilla candle for an hour. The next day the doctors said things were looking good with the stoma and I could try a little bland, low-residue food and liquid later that night. The bag was emptied. I looked away. I got out of bed tentatively and held onto the bag for fear it would fall off because it felt so alien. After the second night, while still feeling awful, I wanted to go home. My head hurt. I wanted fresh air. I think I was there for four nights but it’s all quite a haze and a lot has evaporated from my memory.

I think it was day 3 that I made myself watch while a stoma nurse changed the bag. I listened as she explained a few of the basics and how she would leave a package of supplies for me. A starter kit, for my new life. She said she’d be back the next morning to teach me to change the bag, as I could go home soon. The next day there was no stoma nurse, and when nobody turned up the morning after that I was getting restless. Gone was the girl who couldn’t face looking at the bag, who didn’t want to accept having it. I wanted out of there. It wasn’t me and this ‘thing’ I had on my stomach anymore. It was “me and my bag are busting out of here and going home”!

Everyone copes with what life throws at us in different ways. I tend to keep myself busy and focus on the things I can affect and control. So when I got home, I focused on the practical things. I sorted through my stoma supplies and visited my friend Google for tips and information. I put my energy into trying to de-stress, to get into a routine with checking, emptying and changing the bag, and into eating small amounts regularly throughout the day. I made it through the first day, and then the day after, by focusing on these small, manageable steps.

And these small steps carried me through the first week and beyond. I survived, I coped, I started to get used to having a stoma. It wasn’t a miracle realisation. It wasn’t something I accepted, but it was something that wasn’t as alien to me any more.

Getting Into The Swing Of Things : Slow Steps

You get used to it, bit by bit, in your own time. But just when I was getting into the swing of taking care of the small, practical steps, the stoma life throws you a curve ball. Leaks in the night. Skin irritation. High output. Low output. Pain. Discomfort.

And somehow you deal with these things, too.

Then there’s the first trip outside and the panic of what to do when the bags needs emptying or if you think there may be a leak. Wanting to cover it up and finding your clothes aren’t comfortable or suitable for your new addition. Worrying others can hear those odd sounds it makes at the most inopportune of times. Wanting to travel but not knowing where to start now you have so much to consider with supplies. Needing to expand your diet and fearing food that could cause a problem. Not knowing whether to tell others about your stoma, or what you should say, worrying about how they would react.

Fast forward and I’m shockingly nearly at the two year anniversary of having a stoma. Since then I’ve been through a colectomy to have my large bowel removed. I’m now waiting on stoma revision surgery as my small bowel kinks (causing agony, and an obstruction which has led me to A&E various times) and consultations for another surgery on top. I’ve been dealing with other worsening health conditions. I’ve been on my first holiday abroad, I’ve worn my first bikini, all with a stoma. I’ve lost my job, but I’ve found fulfilment through blogging. I’ve laughed, I’ve cried, I’ve been grateful and I’ve struggled.

Getting Used To Life With A Stoma : A Continual Journey

Adjusting to life with a stoma happened without too much thought. When you have to deal with something, you may just surprise yourself with how resilient you can be. I focused on small, practical steps. But I neglected to appreciate the emotional impact. I had a few occasions early on where I would suddenly break down, sat on my bedroom floor in a mess of tears, pain and heartache. I didn’t know what to do with myself. I felt like a monster because I didn’t know how to talk to myself with compassion. I lacked reassurance that I was still the same person, that everything would be okay. I didn’t have a social life to buoy my spirits. I had to learn to do that for myself. I also had to learn that it was okay to experience whatever I was feeling and that a good cry can be cathartic.

The practical aspects that at first felt so alien, like changing the bag or ordering supplies, become a little easier in time. You learn about hernias and preventing them. You get used to having to be awake in the middle of the night to empty the bag, to scouting out the nearest toilets and to having to take a spare bag with you when you go out. Leaks and blockages and working out what food is okay and what food your stoma hates are all things that can still trip me up, but they become more manageable, less daunting over time as you realise that you can handle whatever happens.

Some days I feel ugly, useless, awful. I still have struggles with other “invisible illnesses” that brings me town, especially the pain and exhaustion with fibromyalgia. I still have issues with my weight and body image, and I’ve put on a lot of weight since the picture I’ve included in my blog post. Other days I feel a sense of resolve and a greater appreciation for my body.

You ride out the tough days and hope to have less as time goes on. You come to see the lessons you’ve learned and the things you’ve gained, rather than the struggles and sense of loss, even though it’s important to acknowledge all of those things rather than pretend you don’t feel them.

I’m not a woman with a stoma. I’m a daughter, a friend, a writer, a woman with a life that includes a stoma. It’s a part of who I am, but it doesn’t define me, nor do my other ‘invisible illnesses’. I’ve not fully made peace with the reasons behind why I ended up being an ostomate. But I’m living, I’m learning and I’m managing each day.

It’s a continual adjustment to a new life, and I wouldn’t be here without the stoma. It’s not a competition and there’s no rush to adjust. Just one foot in front of the other, at your own pace.

This post also features in a slightly shorter form on the Talk Health website.

I obviously can’t cover everything I’d like to in one post, but I hope it gives you a general idea, whether you’re pretty much new to what a stomas is, have one/are due to have one yourself, or perhaps know someone that does.

72 Comments

What a open and honest post which could only come from someone as brilliant as you 💕 I remember years ago being in hospital with yet another bout of diverticulitis and the lady in the next bed had just had a stoma bag fitted. I was so in awe of how she took it all in her stride. It is a fact that whatever life throws at us we deal with it and it does make us stronger.

You are far more than your various illnesses you are a beautiful young vibrant women with lots to look forward to.

I am so incredibly grateful to you, Elaine, for being amazing – you are so compassionate and kind and although I think you think too highly of me, I appreciate your support more than you know. You’re right; whatever life throws at us, we often cope better than we ever would have expected, and even if we don’t, we learn from it and grow stronger in certain ways, and new paths can open up for us where we may only initially see the things that get harder or the doors that close to us. Thank you lovely ♥
Caz xx

It would be lovely to think that something I write could help, even if in just a tiny way, anyone that reads them, that would be amazing. Thank you for the encouragement and lovely comment, Christy! ♥
Caz x

Before I had mine, I didn’t know anyone with a stoma (of course, it’s more than possible I’d known acquaintances without knowing they had one) so it’s always interesting to see whether others know of people in their lives with one. I’m glad you found the post helpful in terms of what to expect in a general sense. Thanks for taking the time to read & comment – I hope you’re having a good week so far! 🙂
Caz x

The husband of my friend has a stoma due to cancer. And it is as you say “Everyone copes with what life throws at us in different ways”. But I really had to push myself to ask how everythings goes with the stoma. I am glad I did, though. I don’t like elephants in the room. It is people like you who encourage people like me to talk about it.

I hope your friend’s husband is doing well following the stoma surgery and also all clear since the cancer diagnosis. You’re right, things like stomas can become an “elephant in the room” and although everyone is different, I’d prefer someone asked me about it because it would face it head on, and then I’d probably crack an awful joke to ease the tension for everyone involved! 🙂

My best friend “wore a bag” as she put it – hers was permanent. And I think the reality is not something doctors prepare you for at all. I think her life was about always knowing where a washroom was, if she needed one quickly, which she sometimes did. I remember being out for a nice walk and ducking into the nearest business so she could take care of things. And of course, knowing which foods were going to be a problem (I remember lettuce was one that created a lot of air for her). And yes, feeling self-conscious about what bathing suit to wear. I remember her choosing a one-piece that was a bikini for all practical purposes thanks to large cutouts on the sides. Very sexy, but the top of her bag (at the very least) poked outside the material. I thought it was perfectly fine but that’s easy for me to say and harder for her to be brave about.
She got hers after the birth of her first child, when she was feeling too sick to care for her. I wish this online community would have been available to her then. There’s such a learning curve, and that’s not even counting the actual health aspect of it – and the money.

You’re right, they don’t prepare you for ‘life’ with a stoma at all, at least that was my experience. Sounds like your best friend had to discover a lot of those things herself with food, clothes, finding the nearest loo etc. The online community, whether that’s informational websites, forums, Facebook support groups or blogs, are so incredibly valuable in this respect, and I’m sorry she didn’t have all of this when she went through coming to terms with her stoma. Thank you so much for sharing your friend’s experience and how you viewed this (like with the swimsuit and the bag poking out – you thought she looked sexy and the bag didn’t matter, but for the person wearing it, it could have felt very different). She was lucky to have you as her friend while she was going through all of that, Jay. xx

There are countless times when I don’t feel like I’ve been all that positive or brave, so it’s wonderful to hear you think otherwise! I do try to temper the positivity of posts on something like my experience of stomas with the negative side, the struggles, the reality; it’s important, I think, to be honest and while I want to be encouraging, I also want to be genuine and let others know they’re not alone if they don’t think they’re feeling all that positive either. Thank you so much, Lynn – have a wonderful rest of your week 🙂
xx

I absolutely love how open and honest you are Caz! Your courage is way beyond inspiring to all your readers and we are lucky for the chance to know you! I always love and appreciate your posts and the advice you give me. You give me so much encouragement that I will never be able to thank you enough!! Always stay your strong and compassion self as we are all so blessed to have you in our lives, even if some of us are not privileged enough to meet you in person!

Caz, I love this. You have captured beautifully what so many of us with stomas have and do experience. I remember the first year with my colostomy was so surreal. I knew this was my new norm and I was capably dealing with looking after it but it still seemed so strange that this had actually happened to me. 8 months after I was hit with a rare bone disease and found myself dealing with something equally if not more bizzare. That actually made my stoma seem more normal from then on. It’s a weird journey isn’t it. You are doing so well and are so inspiring. Thank you fo sharing. Lots of love Sam 💞

I think you’re right – what seems to odd (or challenging, or a level of exhaustion or pain) can actually be replaced by another experience that is stranger/more exhausting/more painful, and what we dealt with before doesn’t seem as bad. I think we learn a lot from what we’ve been through and don’t tend to realise it at first, but those experiences make us more resilient and stronger to deal with whatever may happen next. A strange journey indeed..! Thank you for taking the time to read and leave such a wonderful comment in sharing your own experience, Sam. ♥
Caz xx

Wow! Such a powerful post. My step mum has a stoma and I have been slated for a ileotemy and colostomy and has little concept of the reality of any of it despite conversations with specialists. Thank you for sharing your very personal experience, very brave and so grateful. Inspirational woman!!

I hope your step mum is doing okay with hers. Do you mean that you may be due either an ileostomy or colostomy yourself? Understanding it all is quite hard (the physical aspects and what would happen) and getting your head around it can be something else entirely; it’s a lot to take on board. Please know that I’m here if you have any questions or ever wanted to chat, just drop me an email. Thank you for taking the time to comment – I hope you have a relaxing weekend ahead 🙂
xx

Thank you for sharing. I have a close family member who had his colon removed six months ago or so because of complications with Crohn’s disease. I would have a really hard time dealing with that, but he seems to be doing really well. You do too.

I’m sorry about your family member, but it’s good he seems to be coping well after the surgery. I think you cope better than you may expect with things like this, whether you do it naturally or because you focus on small steps and practical things, and eventually the process becomes a little more familiar and a tad less daunting. I wish him all the very best as it’s a rough road with ostomies and bowel surgery but I hope he gets better and better as time goes on because removing the diseased part of the colon would hopefully make a huge difference. Thank you for sharing and taking the time to comment 🙂
x

The majority of people will never come across the word stoma, far less deal with one….and it is quite a shock the first time you see one! I do remember it as a student nurse and all the body image issues that come with it. Caz, I take my hat off to you for your stoicism and positivity – a woman after my own heart. I know we have immensely different experiences, but I do think we have a similar mindset and as you say by taking one day at a time, you do get through it. There are good days, but there are some bloody awful ones too……but there always has to be something positive to focus on.
I was talking about this with my old nursing friends last weekend and said I am lucky as i am here – my post about the reunion is dedicated to one of our set Kate, who was involved in a hideous car accident that left her severely brain damaged and she died 2 years later. She was mid 20s and about to start a hospice sister post……
No one rocks a bikini and bag like you do!!! C x

I always found it odd to kept being told by doctors and stoma nurses and such that so many people have stomas, and finding it odd that I knew nobody with one; I really don’t think that all that many people necessarily have any experience of or with them directly or indirectly. I knew nothing about them until I was put in that position. I’m so sorry about Kate, and for such a tragedy that totally blindsides like that, it really doesn’t seem fair. You’re right – there needs to be something positive to focus on, good things to come from the bad; it’s about accepting there are bad days but taking it step by step. Thank you so much for the wonderful comment, Claire, you’re an awesome lady and I’m so grateful to have ‘met’ you in the blogging world! ♥

Fantastic post, Caz – you are such an inspiration! I have learned so much from reading this post and can just hear how strong you are in your writing. Oh – and I wish that I looked as good as you do in a bikini! Keep going, Caz, you are amazing 🙂 xx

Thank you so much, Jen, I really appreciate your support and taking the time to read & comment, it means a lot! I’m really glad you found it insightful and that you could learn something from the post as that’s what I had hoped to be able to do with it. I hope you have a lovely weekend ♥

I’ve had a colostomy for 18 years now. I knew going into surgery for colorectal cancer that I would have one I have to say it is amazing how the body can readjust….no rectum, no problem …we’ll just redirect out through this little sleeve here. I have been fortunate to not have any problems with skin issues, appliance failures or any digestive upsets. I’m happy to tell people I have an ostomy because I think there are still many people who fear what they see as “the dreaded ‘bag’ outcome.” I don’t wear a bikini but I was never much of a bikini wearer so that is not much different now. But I admire the photos I have seen of young people who do wear bikinis and have their bags in colorful covers. Thanks for this encouraging post.

I’m so glad you have got on okay with your colostomy and that it’s been a positive move in overcoming cancer; I do hope you’re okay now.. Thank you so much for taking the time to share your experience, Anne! ♥

What a lovely, honest post. I have learnt a lot from it and think you are inspirational. I also love your photo that you put up, you look fab. Although I don’t have personal experience of what you have been through, I think you are spot on about dealing with things step by step at your own pace.

That means a lot, thank you. I think whatever we’re going through when it gets tough (such as dealing with young boys!), remembering to take it step by step can be so important because the whole thing otherwise is rather overwhelming. Thank you for the wonderful comment, Suzanne ♥

I’m glad you found the post encouraging and that you could learn a little from it, that’s fantastic. Thank you for your support & such a lovely comment, Emma, it’s much appreciated. I hope you’re having a good weekend ♥

Caz thank you for being so honest with this post. I learnt a lot from your post I know a bit about stomas but not as much as I do now. I remember your holiday loved reading about that and you with your cover over your stoma and those gorgeous bathers. thank you so much xx

So courageous of you to allow yourself to be so vulnerable and helping me understand fibromyalgia. You are raising awareness and helping people like me understand the illness. I thank you a million times for sharing your journey. 🧡 I too struggle with chronic pain and an invisible illness and your journey has resonated deeply. You are incredibly strong 🙂

Thank you for your kind words, and I’m glad it resonated with you so that you know you’re not alone (in a way, but I hate that you’re struggling yourself with chronic pain & invisible illness). Your comment is very much appreciated! ♥

Oh my gosh, you are such an inspiration. You really have been through a lot and to see someone take it so well and go through with a risky surgery like this so that you can keep on doing you is amazing. Thanks for telling your story and I look forward to reading your blog!

You are supremely generous to share your experience with us. As a reader, I feel privileged to have a role in anything that helps you get stronger, because to me it — now I’m getting all convoluted, so I hope you get the gist of what I’m trying to say, LOL — the fact that there can be a give & take to this wonderfulness of yours makes me happy. wishing you only the very best, dear

if you’re interested, I’d love for you to guest blog post on my site — then my readers could meet you & visit your site & you could also reblog it back to here — if so, here’s a link to flexible guidelines:

I have a stoma too but mine is a urostomy.. I lost my bladder to IC when I was 28. I’m 47 now. I”ve never met another person with a urostomy in all these years. It’s lonely. The frequency is extreme so it’s robbed a lot of my life. Now I’m also dealing with GI issues. Sorry you’ve had to go through all of this. It’s a huge deal not only physically but emotionally as well.

Right back at you – I’m also sorry you’ve had to deal with what you have, and for nearly 20 years. I haven’t ‘met’ anyone with a stoma either in real life, but I can appreciate ileostomies are more common and in public knowledge than urostomies. I find that with online groups such as on Facebook it feels a little less lonely, there’s a degree of camaraderie and support; do you use those at all? I keep up with your journey on your blog and my heart aches that you’ve got so much on your plate, and with more recent issues to add on top. Please know I’m always here if you want to get in touch to chat. Thank you for the comment lovely ♥
xx

Aw that is an incredibly lovely thing to say, thank you so much! I’m glad I could be honest with this post, show the struggles and the strength that can come with such a journey. Thank you for taking the time to read & comment, it’s much appreciated. Have a good week! 🙂

Having read your blog post about stoma’s i can relate and understand your experiences. I got mine when i was 16 and found there was no support group or blogs at that time. Posts such as these can give optimism and insight for fellow patients. It is not an easy topic to be open and honest, however you have done it and deserve kudos for doing that. You will get bad, average and good days.. That is perfectly okay and should be expected. Don’t be too hard on yourself too..

If you have any questions or anything please, i’ve now got 10+ years of experience so might be able to help where possible.

I’m sorry you had yours both so young & at a time when there was no online support, which is invaluable for people now. Thank you so much for your wonderful and kind comment. Just so you know it’s a two-way street; while you have more experience than I do at stoma life, I have open ears (or eyes, in this case) so you can always drop me an email if you ever wanted to chat to someone in a similar boat. Thanks again, Simon and I hope you have a positive week ahead. Caz 🙂

“I’m not a woman with a stoma. I’m a daughter, a friend, a writer, a woman with a life that includes a stoma. It’s a part of who I am, but it doesn’t define me, nor do my other ‘invisible illnesses’. ”

You are such a brave, amazing, and beautiful person! What an inspiration you are to so many people whose lives you’ve touched! I wish you healing and happiness! God bless you.